I asked my son if I could share his story with ASPIRE; he could help people. For the first time in a long time, he smiled and said he felt special. Talk about silver linings and self-efficacy.
Guardians of the Galaxy just came out in the theater, and Michael (age 10) wanted to go. We were waiting on bloodwork advised by the family naturopath at the time, but we were in the midst of what turned out to be a PANS flare. Michael had over 30 motor and vocal tics, including full-body jerks and a constant humming sound while intermittently smacking his lips. He also had trouble sleeping, incredible anxiety, emotional lability, and more. We were terrified. I remember sitting in the corner of the theater in seats purchased far away from others so he could tic in peace. I remember the stare of another mom and the paralysis I felt in trying to help my son at this time. Her stare was a mix of disbelief and pity. I also received this stare from the nurse when we brought him in to get an EEG to see if these full-body tics were seizures; they were not seizures. I also received this stare from friends who knew Michael prior to this 3-month flare.
Michael couldn’t sleep. He couldn’t read because of the tics. Eating involved bizarre arm jerks, so he stood up to eat. I had to rock him in a rocking chair at night to fall asleep. He had to go to the bathroom often. He was in a constant state of anxiety. He lost weight.
One doctor told me he had severe debilitating Tourette’s, and there was nothing we could do, and medication only helps a little. (Sadly, my child operated under this “truth” for a few months, and he was devastated). Another doctor told me it could be PANDAS, did a blood test for strep, and said it was not PANDAS. Another doctor told me PANDAS was a made-up diagnosis, and it didn’t exist. It was a scam by people who sold snake oil. (My son, after that appointment, asked me if he could try snake oil. I cried inside.) Another doctor told me he would grow out of it. Another doctor told me it was PANDAS and provided some treatments that didn’t help.
So I researched until I reached the end of the Internet–every youtube video, medical journal, blog about Tourette’s, PANS PANDAS, tics, Lyme, conversion disorder. I joined (and left) many Facebook pages. I read about dopamine and serotonin and glutamate and acetylcholine and every neurotransmitter. I researched the microbiome. I read about the amygdala, the basal ganglia, the thalamus, and other parts of the brain. The immune system. The gut. The nervous system. The excretory system. Even the lymphatic system! Every vitamin deficiency. I researched medications and studies associated with – mental health. ADD. OCD. CBT. DBT. CBIT. ERP. HRT. Diets—all kinds. I googled PANDAS success stories just looking for hope. I didn’t find many. You name it, I read it. There was no stone unturned. Not when my baby was suffering.
Just what was going on? He was FINE until he turned 10. Fidgety, yes. Leg cramps, yes. Nosebleeds, oddly yes. Mild shoulder shrugs, yes. But otherwise, FINE. And HAPPY. I had brought his inability to sit still up to his pediatrician at age 8 but we chalked it up to being a boy.
Let’s get to the end of this story quickly. Michael is now 12 and a half, and we found the right treatment path. There was one year of crisis followed by one year of healing. We are now in that world of recovery. He has minimal tics that really are only noticeable by me, and he can do just about everything and more. He has friends. He laughs. There is HOPE.
What did we do that helped?
We found the proper treatment in an office run by fabulous, intelligent women doctors who understand PANS/PANDAS/Lyme/Infections/Immune Dysregulation/Digestion/Homeopathy/Conventional Medication/Integrative Medicine.
Testing. We did a slew of testing based on our team of doctors for infections, nutritional deficiencies, basic and advanced hematological markers, and more.
Implemented a therapeutic diet. I never withheld food from him, but I added farm-fresh fruits and vegetables and meats, even organ meats to his diet! Food is medicine. I researched farms, and I found a regenerative farm that rotates the soil because all of our minerals and vitamins come from good, healthy soil. I bought my salmon from Bristol Bay, Alaska. My goal was to get good nutrients into this kid by hook or by crook. My saving grace was soup, in which I boiled the carcass of chickens and added as many different veggies as I could. I learned to bake bread. He still had his nuggets and mac and cheese and cookies, but our super healthy real food to processed ratio was about 80% to 20%. Today’s food supply is not the same food supply from 50 years ago.
Exercise. The body needs to be stimulated enough, both mentally and physically in order to rest and heal – biking, swimming, running, and more. Exercise brings about detoxification and helps us sleep better, which in turn helps us detoxify our system, which helps us sleep….
Supplements and medications based on the doctors’ advice. We never tried the more hardline SSRI-type pharmaceuticals or other pharmaceuticals designed specifically to block dopamine.
CBIT and CBT Therapy. CBIT is a comprehensive behavioral intervention for tics founded by Dr. Douglas Woods. We saw two therapists ultimately to help with this. Tics are movements that people do because it releases a feeling. CBIT taught Michael competing responses that gave him some control over interrupting his tics until the tic burned out. This gave Michael some control over his body. Simultaneously, Cognitive Behavioral Therapy (CBT) helped Michael to face his fears literally. We worked with Exposure Response strategies to learn again to go to bed by himself and other fears he had developed over the course of this illness.
I went to therapy. I wanted to make sure my family and I were not inadvertently adding to the challenges of his condition. I needed an outlet to cope. I didn’t want my marriage to fall apart under the weight of the crisis. (We are still happily married and maybe even stronger for the wear.) Knowing when to step in and help my son overtly and know when to minimize his condition was really important. Sometimes pretending life was normal WAS a strategy in helping my son envision normalcy. We were modeling how to cope with illness and not let it get the best of us. Part of Pans can involve anxiety and ocd, both of which need to be “fed” in order to survive. We were not going to feed the anxiety or OCD beast. Dealing with tics and anxiety, and ocd is something that the parent cannot fix. The child must do it on their own.
Keeping Balance in the Home. When one person is in crisis, the equilibrium of the home changes. We worked on keeping the home in balance -work, school, other siblings, marriage, and all that needs to keep moving forward. This requires giving the illness enough attention but not so much that it throws everything off balance. It’s good for everyone, including the patient. There are ways to keep the home a calm, happy, safe, secure, fun place. Michael loves animals. We got him a puppy.
Helping my son develop a hero’s mindset. As parents, we want the best for our children. We want them to be happy. But there is something uniquely interesting about American culture in that we think happiness does not involve struggle. And I don’t mean a “just suck it up” attitude. I mean that we can help our children view their own lives in the same way as described by Joseph Campbell in a Hero with a Thousand Faces. We can be the heroes of our own story. We have to say yes to the hero’s call to adventure, although it will be harrowing and arduous. But you see, every hero has heroic qualities. For Michael, it was about helping him see his own unique talents (his ability to be open to therapy and working on the strategies he learned one by one.) Heroes face setbacks and trials on their quest, but they have mentors and friends who help them survive. So many great children’s movies are predicated on the hero story. Oftentimes the main child hero is orphaned. Why? It’s because the parents cannot fix a hero’s problems. The hero has to do it alone and succeed on his/her own terms. Harry Potter had a tough road ahead of him, but he also has Dumbledore and Sirius Black and Ron and Hermione and some magic along the way. He says yes to the adventure and goes on his quest. The cave you fear holds the treasure you seek. Harry faces Voldemort and defeats him. Hero stories are infinitely powerful. Heroes grow wiser, not because they win in the end, but because they conquer and recreate themselves on a bolder, more spiritual plane. They pass through the fire, and they come out the other side. If Harry Potter works for you, use it. If not, Katniss Everdeen works too. So does Luke Skywalker. Frodo Baggins. Even Jack and the beanstalk. And any Marvel hero. Like a phoenix, they all rise from the ashes.
Just Breathe. Let me end with one final story. We had a checkup last week, and I received an email about sharing our PANS story to let families know they are not alone and there is hope. But my son had no interest in writing about his experience, probably mostly because he already lived it. It’s a healthy response. I think it means he’s growing past it, although we are still in treatment. He is, however, keenly aware of what he’s been through. I asked him if he had any advice for kids starting on this journey. At the same time we were talking, I saw he had a small bottle of Breathe, an essential oil he uses “when he gets fidgety” on his desk. It’s one strategy in his arsenal of strategies. So he paused. Then he looked at me, pausing his video game. And my son, a man of few words, stopped, took a conscious breath, and with heroic wisdom in his eyes, said: “I would tell them to just breathe.” It doesn’t sound like much, but allow me to unpack this.
- Breathing is a focused competing response for a few of his stronger tics. He uses a visualization strategy that includes a dedicated breathing technique to make it through a tic.
- He uses the essential oil to calm mild anxiety and fidgetiness